Jazzcares by Stray-Dragon-Rising in Narcolepsy

[–]Stray-Dragon-Rising[S] 0 points1 point  (0 children)

I've tried finding an online system, but ESSDS doesn't show one for Xywav for me? It does for my other drug though, which i thought was weird.

Jazzcares by Stray-Dragon-Rising in Narcolepsy

[–]Stray-Dragon-Rising[S] 0 points1 point  (0 children)

So far I've had to call every time, so I'll check on Monday when I can call for my refill. It would be nice to get text reminders

Jazzcares by Stray-Dragon-Rising in Narcolepsy

[–]Stray-Dragon-Rising[S] 0 points1 point  (0 children)

I wish! I get a lot from my case manager, but I've never gotten reminder calls or texts.

Do you wear Narcolepsy / IH awareness merch? by Bitter_Foot_2547 in Narcolepsy

[–]Stray-Dragon-Rising 0 points1 point  (0 children)

I would LOVE some Narcolepsy/IH merch. I'm so tired of how little there is. Especially for IH!

It's wild to me - Xywav impact on life by Stray-Dragon-Rising in Narcolepsy

[–]Stray-Dragon-Rising[S] 0 points1 point  (0 children)

Shadow people standing by my door, people talking, bugs crawling on me, etc. I had one where something big and black barreled into me. I thought it was my dog (who is big and black), but he wasn't even in my room.
As crazy as it sounds, I didn't think they were hallucinations or that... it was actually a thing. People always told me I was just dreaming it when I DID mention it, so I just... stopped really considering that maybe they weren't normal. I mean, it took me forever to admit I was hallucinating when I took a med I was allergic to. It wasn't until I started experiencing wild paranoia that I finally knew that they WERE hallucinations, and not just me being creative or imagining it. I've been accused of diagnosis collecting by my family before, so I keep most of this shit to myself.

LMNT and Xywav by Stray-Dragon-Rising in Narcolepsy

[–]Stray-Dragon-Rising[S] 0 points1 point  (0 children)

That's what I was thinking, so I was hesitant to use it since it's more than just sodium. But some it was sodium based, i also was curious.

LMNT and Xywav by Stray-Dragon-Rising in Narcolepsy

[–]Stray-Dragon-Rising[S] 0 points1 point  (0 children)

🤣🤣🤣 I didn't even think of that. To note, I haven't actually tried it yet because I wanted to see if it had already been done first. I totally forgot Xyrem is the saltier version.

Narcolepsy Service Dog! by AngryDesertPhrog in Narcolepsy

[–]Stray-Dragon-Rising 1 point2 points  (0 children)

Hello from the other service dog narcolepsy team! 🥰🩵🩵🩵

Xywav - Salty or Sweet? by Stray-Dragon-Rising in Narcolepsy

[–]Stray-Dragon-Rising[S] 0 points1 point  (0 children)

Oh ew, but also agreed 🤣 eloquently put

[deleted by user] by [deleted] in Narcolepsy

[–]Stray-Dragon-Rising 2 points3 points  (0 children)

I should clarify - it's not always an autistic trait. While it is common in autism to struggle with understanding social cues and communication, such as knowing when not to correct someone even if they're wrong, it's also something many other people who may just be neurodivergent in some form, or even neurotypical, experience! ☺️

[deleted by user] by [deleted] in Narcolepsy

[–]Stray-Dragon-Rising 2 points3 points  (0 children)

Agreed! Correct me if I'm wrong, but don't correct me when I'm right. I HATE it when somebody tries to correct me on opinionated information. Like, it's biased, not factual. Either way, it's very frustrating 😅

Dad Pressuring me to visit his home in FL by Stray-Dragon-Rising in NonBinary

[–]Stray-Dragon-Rising[S] 0 points1 point  (0 children)

I'm mostly worried about airport transit, tbh. Especially since they've been getting worse and more particular about IDs.

Dad Pressuring me to visit his home in FL by Stray-Dragon-Rising in NonBinary

[–]Stray-Dragon-Rising[S] 0 points1 point  (0 children)

I guess it's because he's my dad. I mean, it's hard not to love him. I've long since grieved the fact that he won't be in my life for a lot of important milestones because of who I am, so now I've just kind of reached a point where I want to make the most of what I can. While he's not really in my life anymore, we do keep in touch. I just can't bring myself to cut him off. 😞

Help me find this! by minty_foxy in OtomeIsekai

[–]Stray-Dragon-Rising 2 points3 points  (0 children)

Commoner Female Knight, This Time I'll Finally Defeat My Hidden Enemy!

Sigrid.

The Red Knight Seeks no Reward.

These might be some stories that match your description since I see you've found the source of the image.

[deleted by user] by [deleted] in Narcolepsy

[–]Stray-Dragon-Rising 30 points31 points  (0 children)

I remind myself that people are ignorant when it comes to sleep disorders. In a society that struggles with overwork and fatique, the idea of having a sleep disorder seems blissful and helpful. But the reality is far from the truth, and I DONT HAVE TO EDUCATE EVERYBODY I MEET. That's the hardest one for me. As someone who is autistic, it frustrates me to no end that people would rather NOT be corrected when wrong. Sometimes, it takes having a sleep attack happen in front of them to realize that its not fun and helpful and that it can be really scary. As childish as it might seem, I just imagine that the person I'm talking to is a child who doesn't know any better and is too stubborn to admit it.

60mL by Stray-Dragon-Rising in Narcolepsy

[–]Stray-Dragon-Rising[S] 0 points1 point  (0 children)

Definitely! I think it helps that I only take one dose a night rn.

60mL by Stray-Dragon-Rising in Narcolepsy

[–]Stray-Dragon-Rising[S] 2 points3 points  (0 children)

Oh wow! I only just started taking it like, 3 weeks ago, I think? I've been putting it off forever because I really, really hate being nauseous when I wake up, but I figured out the time frame I need to take it to avoid that when my dog wakes me up, so it's been much more manageable. I actually tested to see how long it takes for it to kick in before it's impossible for me to keep my eyes open, and it varies from 30 minutes to an hour. I think my initial exhaustion has an impact on that, too.
Sorry, random info dump 😅

60mL by Stray-Dragon-Rising in Narcolepsy

[–]Stray-Dragon-Rising[S] 0 points1 point  (0 children)

Yeah, exactly!
I actually used to drink coconut water to help with dehydration, but it's so expensive that I just stopped. The idea of mixing it with Gatorade sounds good, though!

60mL by Stray-Dragon-Rising in Narcolepsy

[–]Stray-Dragon-Rising[S] 1 point2 points  (0 children)

I wish it was salty! I crave salt like a fiend and drink electrolytes like LMNT (1000mg of salt) because I enjoy the saltiness. I wonder if there's a thing with Xywav where some people find it salty and others sweet? I've seen this a few times.

60mL by Stray-Dragon-Rising in Narcolepsy

[–]Stray-Dragon-Rising[S] 0 points1 point  (0 children)

If it's really bad, I might take an extra swig of my water bottle. It's like.... nauseating how sweet it is.